The guidelines for the prevention, detection and management of CKD were evaluated for quality, comprehensiveness and scope. Although comprehensive, we identified some implicit and explicit discrepancies across guidelines in regards to detection of CKD, targets for management of risk factors and dietary intake of protein. This thesis also provides an in-depth assessment of patients’ awareness, education needs and beliefs about CKD. Patients are not aware of the interaction between kidney disease and developing a heart or stroke and many perceived diabetes and CVD as more threatening to life compared to CKD. Participants lacked knowledge about the signs and symptoms of CKD and for many it was difficult to believe they had the disease due to its initial asymptomatic nature.
Development of comprehensive educational resources including practical lifestyle recommendations, combined with active multidisciplinary and physician engagement in prevention, are likely to promote patient satisfaction. Educational interventions facilitated improvements in outcomes, but these were inconsistent across studies. There is a need for the development of well-designed studies that include effective interventions that are multifaceted, group based, interactive and involve a multidisciplinary team.
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Appendix A
Figure A1. Literature search results
Medline search 1948 to November Week 3 2011 1. Kidney diseases/
2. Renal insufficiency/
3. exp renal insufficiency, chronic/
4. Kidney disease$.ti.
5. (chronic kidney or chronic renal).ti.
6. Or/1-5
Embase search 1980 to 2011 week 50 1. exp Chronic kidney disease/
Australian and New Zealand Society of Nephrology www.nephrology.edu.au
Hong Kong Society of Nephrology www.hksn.org
Japanese Society of Nephrology www.jsn.or.jp/en/
The Korean Society of Nephrology www.ksn.or.kr/english
Taiwan Society of Nephrology www.tsn.org.tw
Bangladesh Renal Society / Kidney Foundation Bangladesh www.kidneybangla.org
Chinese Society of Nephrology No website access
Indian Society of Nephrology www.isn-india.com
Indonesian Society of Nephrology No website access
Malaysian Society of Nephrology www.msn.org.my/index.jsp
Nepal Society of Nephrology No website access
Nephrology Society of Thailand www.nephrothai.org
Pakistan Society of Nephrology No website
Philippine Society of Nephrology www.psn.ph; www.mypsn.org
Singapore Society of Nephrology www.ssn.org.sg
Sri Lankan Society of Nephrology No website
Latin America
Latin American Society of Nephrology and Hypertension (SLANH) www.slanh.org
Venezuelan Society of Nephrology www.svnefrologia.org
Peruvian Society of Nephrology www.spn.pe
*Argentinian society of Nephrology www.san.org.ar
Brazilian society of Nephrology www.sbn.org.br
Cuban society of Nephrology www.sld.cu/sitios/nefrologia
Mexican Society of Nephrology and Transplantation No website
Uruguayan society of Nephrology www.nefrouruguay.com
*Chilean society of nephrology www.sociedaddenefro.cv.cl; www.nefro.cl
Paraguayan society of Nephrology www.spn.org.py
Sociedad Boliviana de nefrologia La Paz society of Nephrology (Bolivia)
No website for Bolivia but yes for La Paz www.galenored.com/sopanefro
Sociedad Ecuatoriana de nefrologia No website
Colombian Association of nephrology and hypertension www.asocolnef.com
Sociedad Panamena de nefrologia No website
Nephrolgy and hypertension Association of El Salvador www.medicosdeelsalvador.com;www.nefrologiaelsalvador.
com
Sociedad Guatemalteca de nefrologia No website
North America
Canadian Society of Nephrology www.csncn.ca
American Society of Nephrology www.asn-online.org
Europe
European Renal Association www.era-edta.org
Albanian Society of Nephrology No website
Algerian Society of Nephrology, Dialysis and Transplantation www.sandt.asso.dz
Austrian Society of Nephrology www.nephro.at
Belarus Society of Nephrology No website
Belgian Society of Nephrology www.bvn-sbn.be
Society of Nephrology, Dialysis and Kidney Transplantation in Bosnia and Herzegovina
www.undt.ba
Bulgarian Society of Nephrology www.bgnephrology.com
Croatian Society for Nephrology, Dialysis and Transplantation www.hdndt.org
Cypriot Society of Nephrology No website
Czech Society of Nephrology www.nefrol.cz
Danish Society of Nephrology www.nephrology.dk
The Egyptian Society of Nephrology & Transplantation www.esnonline.net
Estonian Society of Nephrology No website
Macedonian Society of Nephrology, Dialysis, Transplantation &
Artificial Organs
www.nephrologia.org.mk
Finnish Society of Nephrology www.terveysportti.fi/kotisivut/sivut.koti?p_sivusto=580
* French Society of Nephrology www.soc-nephrologie.org
Dialysis, Nephrology & Kidney Transplantation Union of Georgia www.dntunion.ge/en
German Society of Nephrology www.dgfn.eu
Hellenic Society of Nephrology www.ene.gr
Hungarian Society of Nephrology www.nephrologia.hu
Icelandic Renal Association No website
Irish Nephrology Society www.nephrology.ie
The Israeli Society of Nephrology and Hypertension www.isnh.org.il
* Italian Society of Nephrology www.sin-italy.org
Latvian Nephrologist Association No website
Lebanese Society of Nephrology & Hypertension www.lsnh.org Lithuanian Nephrology, Dialysis & Transplantation Association www.lndta.lt Moldavian Society of Nephrology and Urology No website
Montenegrin Society of Nephrology No website
Moroccan Society of Nephrology www.nephro-maroc.ma/index.action
* Dutch Federation of Nephrology www.nefro.nl
Norwegian Society of Nephrology www.nephro.no
Polish Society of Nephrology www.PTNefro.org
Portuguese Society of Nephrology www.spnefro.pt
Romanian Society of Nephrology No website
Russian Society of Nephrology www.nephro.ru
Scottish Society of Nephrology www.show.scot.nhs.uk
Serbian Association of Nephrology www.kns2010.org/kontakt
Slovak Nephrological Society www.nefro.sk
South African renal society www.sa-renalsociety.org
African Association of Nephrology www.afran.net
Nigerian Association of Nephrology www.nanephrology.org
Sudanese society of kidney diseases and transplantation www.sskdt.com
Kenya renal association www.kenyarenal.org
Table A3. AGREE II Instrument: domains and definitions
Domain Content No. of
items Scope and purpose Addresses the overall aim of the guideline, the specific clinical questions
and the target patient population
3
Stakeholder involvement Addresses the extent to which the guideline represents the views of its intended users (relevant professional groups, patients, target users defined, piloting among target users)
3
Rigour of development Addresses the process used to collect and synthesize the evidence, the methods to formulate the recommendations, process for updating the guidelines, external review
8
Clarity and presentation Addresses the language and format of the guideline (recommendations are specific and unambiguous, different options for management are presented, key recommendations are identifiable, tools for application are available)
3
Applicability Addresses the likely organisational, behavioural, and cost implications of applying the guideline, key criteria for monitoring and/or audit purposes
4
Editorial independence Addresses the independence of the recommendations and
acknowledgement of possible conflict of interest from the guideline development group
2
Appendix B
Item B1 – Participant survey
Age: ______ Male / Female
Please read the following questions and circle the answer in the scale provided.
a) Consider 100 people who have type 2 diabetes, for more than 5 years. How many people do you think will develop:
Comments: _________________________________________________________________
___________________________________________________________________________
___________________________________________________________________________
___________________________________________________________________________
___________________________________________________________________________
1. Kidney
3. Heart attack
0 10 20 30 40 50 60 70 80 90 100
2. Stroke
0 10 20 30 40 50 60 70 80 90 100
0 10 20 30 40 50 60 70 80 90 100
4. Cancer
0 10 20 30 40 50 60 70 80 90 100
0 10 20 30 40 50 60 70 80 90 100 5. Death
5 years. How many people do you think will develop:
Comments: _________________________________________________________________
___________________________________________________________________________
___________________________________________________________________________
___________________________________________________________________________
___________________________________________________________________________
1. Heart attack
3. Cancer
0 10 20 30 40 50 60 70 80 90 100
2. Stroke
0 10 20 30 40 50 60 70 80 90 100
0 10 20 30 40 50 60 70 80 90 100
4. Death
0 10 20 30 40 50 60 70 80 90 100
do you think will develop:
Comments: _________________________________________________________________
___________________________________________________________________________
___________________________________________________________________________
___________________________________________________________________________
___________________________________________________________________________
1. Heart attack
3. Kidney disease
0 10 20 30 40 50 60 70 80 90 100
2. Stroke
0 10 20 30 40 50 60 70 80 90 100
0 10 20 30 40 50 60 70 80 90 100
4. Cancer
0 10 20 30 40 50 60 70 80 90 100
0 10 20 30 40 50 60 70 80 90 100 5. Death
Comments: _________________________________________________________________
___________________________________________________________________________
___________________________________________________________________________
___________________________________________________________________________
___________________________________________________________________________
1. Family history of kidney disease 2. Over 60 years of age
3. High blood pressure 4. Obesity
5. Alcohol consumption
6. Aboriginal or Torres Strait Islander
7. Diabetes
8. Over 50 years of age 9. Cancer
10. Smoking
11. Inadequate fluid intake 12. Other (please specify) 13. Other (please specify)
Appendix C
Table C1: Running sheet for focus groups
Topic Question Guides
Introduction Welcome and thank participants for attending
Introduce yourself (facilitator) and other study researchers present during the session.
(State your workplace and affiliations)
Introduce the study: who is involved, types of participants, recruiting centres, the purpose of the study and intentions.
Remind participants that the study consists of:
1. Voluntary participation; leave at any time; discuss issues privately.
2. Confidential; nothing is traced back to you.
3. Free to agree or disagree with other’s opinions.
4. Respectful and considerate of one another.
5. Ask questions but answer not guaranteed.
6. Discussion will be recorded; transcribed and analysed later on.
Ice breaker As the participants introduce themselves, they should provide an answer to ‘ice breaker’
question provided by the facilitator. Example of a question: What is the one thing you really enjoy doing?
Experiences We’ll start off this session by discussing your experiences since your diagnosis.
The following questions were used by the facilitator to stimulate discussion about participants’ experiences at the time of diagnosis and since then.
1. How did you react or what were your initial thoughts and feelings when you were told you have kidney disease?
2. How did you find out that you had kidney disease? Did you have any signs / symptoms?
3. What sorts of things were you told about kidney disease?
4. Has kidney disease made an impact on your day-to-day living? How?
The facilitator can engage others into the conversation by asking questions such as:
1. Do people agree?
2. Anyone have anything else to add/say?
3. Any other opinions/experiences that we haven’t discussed?
Current concerns The following questions were sued to stimulate discussion about the participants’
major concerns.
1. Do you have any concerns about the short-term and long-term future?
2. Are you concerned about any long-term impacts of chronic kidney disease?
3. How has your diagnosis affected your family?
4. How are you coping (physically, emotionally, psychologically)? Do you get any support? (examples, services, financial, community nurse)
Current knowledge
The following prompt questions were used to stimulate discussion about what participants know about kidney disease and about what they would like to know.
1. Would anyone like to share what they know?
2. What do you know about chronic kidney disease? (diagnosis, prevention, treatment, lifestyle impact)
3. When you were diagnosed - What sorts of things did you want to know? Have you been given this information?
4. Is there anything else you would like to know about CKD? Any questions that have not been answered?
Topic Question Guides Suggestions for
patient education
The following prompt questions were used to discuss participant’s ideas and opinions about patient education and available services.
1. What kind of information do you think is important to people with CKD?
2. Where do you go to get your information?
Ormandy1 (2008) topics – use as Prompts 1. CKD information
2. Renal replacement therapy
3. Physical symptoms and body image
4. Complications of both disease and treatment 5. Family and social life
3. Who should be educating patients? (GP, nephrologist, nurse)
4. In what format should the information/education be given? Lectures / seminars;
pamphlets; DVD; internet site?
5. Do you think you would benefit from listening to and speaking with patients who have more advanced kidney disease? How do you think this will affect you?
6. Do you ask your doctor any questions? Why/Why not
These questions were used to prompt discussion about behavior modification and lifestyle changes.
7. What do you think are the things that motivate people to make life style changes to improve their health?
8. What do you think are the things that stop people from making life changes?
Evaluation of current resources
Participants were shown various information resources, which they evaluated and gave feedback on.
The following questions were used to stimulate discussion for improving current resources or developing one.
Evaluation
1. Which resource do you think is the best one? Which is the most attractive to you?
2. Does it make you want to read it? Is it easy/hard to read? Is it interesting? Is it motivating or boring? Is it easy or difficult to understand?
Improvement
3. What can be done to improve these publications/resources? E.g. Less writing? More writing? More pictures?
4. Should we include a question and answer section?
5. Should we include a section that advises on the type of questions you should be asking your doctor?
6. Should we include some form of track record sheet, which will be managed by you?
Close Thank participants and give out reimbursements.
1. Ormandy P. Information topics important to chronic kidney disease patients: a systematic review. Journal of Renal Care. 2008;34(1):19-27.
Table C2 Kidney disease information
Organization Type Title Web source
Kidney Health Australia
Pamphlet (2008) Kidneys & Blood Pressure www.kidney.org.au Pamphlet (2008) Kidney & Urinary Health
Pamphlet (2008) Kidneys & Diabetes
Handbook (2008) Living with reduced kidney function – a handbook for self-management of chronic kidney disease
North West Dialysis Service
Pamphlet (2007) “I have kidney failure” What does that mean?
www.mh.org.au
Pamphlet (2007) Treatment for Chronic Kidney Failure and End Stage Kidney Failure
New South Wales
New South Wales